Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
Jared sent me the lyrics of this song. I walked to his room and said “These are beautiful lyrics Angel.”
“I think this is how Mom must feel Oumie” he said….
It’s Not My Time Lyric – 3 Doors Down
Looking back at the beginning of this And how life was Just you and me and love and all of our friends Living life like an ocean
But now the current’s only pulling me down It’s getting harder to breathe It won’t be too long and I’ll be going under Can you save me from this?
‘Cause it’s not my time, I’m not going There’s a fear in me and it’s not showing This could be the end of me And everything I know, ooh, but I won’t go
I look ahead to all the plans that we made And the dreams that we had I’m in a world that tries to take them away Oh, but I’m taking them back
‘Cause all this time I’ve just been too blind to understand What should matter to me My friend, this life we live, it’s not what we have It’s what we believe in
It’s not my time, I’m not going There’s a fear in me, it’s not showing This could be the end of me And everything I know
But it’s not my time, I’m not going There’s a will in me and now I know that This could be the end of me And everything I know, ooh, but I won’t go! I won’t go!
There might be more than you believe (There might be more than you believe) And there might be more than you can see
But it’s not my time, I’m not going There’s a fear in me, it’s not showing This could be the end of me And everything I know
But it’s not my time, I’m not going There’s a will in me and now it’s gonna show This could be the end of me And everything I know
There might be more than you believe (There might be more than you believe) And there might be more than you can see But I won’t go, oh no I won’t go down, yeah
For true love is inexhaustible; the more you give, the more you have. And if you go to draw at the true fountainhead, the more water you draw, the more abundant is its flow.Antoine de Saint-Exupery
Love entails profound care for another person. Love is boundless. “One can never love too much….”
No! That is not true. Loving too much is as scary as lovelessness.
It is hard to see how positive care can be criticized. Even normal cases of romantic love tend to create a narrow temporal perspective that focuses on the beloved and is often oblivious to other considerations. In a romantic love situation loving too much means that one person in the relationship’s love is not returned in equal measures creating an unhealthy in balance.. Profound romantic love is not in its nature excessively wrong; but some cases of such love have a greater chance of being so.
With regard to parental love, some might claim that loving a child too much could be harmful as it can spoil the child. Others might argue that the problem here is not in loving the child too much, but in not understanding what is good for her in the short and long term. To this one might respond that it is precisely the nature of intense emotions not to realize the genuine nature of the given circumstances.
When a child is ill the balance of love becomes severely disturbed.
So I am actually going to rephrase the question – Can a caregiver “care too much?” My answer to that: Perhaps not emotionally — hearts are pretty boundless — but in practical terms, definitely, yes. It is possible to do too much for the person you look after.
Obviously, aging and ill members of family require different levels of assistance. Providing help is often the only humane thing we can do for our loved ones. I have researched this and discovered that sometimes well-intentioned caregivers overdo the role without realizing it.
The rest of your life suffers: A spouse grows resentful and distant, you’re less attentive or fall behind at work, your child feels neglected and your friends think you’ve dropped off the planet.
Your sick loved one, on whose behalf you’re working so tirelessly, is also negatively affected. He or she may feel resentment over what’s perceived as invasiveness, may become depressed over a lack of control in his or her life, or may develop “learned helplessness” and mental and physical skills suffer from lack of practice.
How do you know when you’ve crossed the line from good intentions to brink-of-backfiring?
You handle all the details of the person’s life so effectively that they complain of having “nothing to do.” Vic for a long time said “Mom I can do my own tablets…. I said “No baby, it is fine. Let me do it!”
You’re regularly in doctors’ offices – but they’re the doctors of your loved one. You can’t remember the last time you had a check-up of your own. True!
You can’t remember the last time you took a “day off” — that is a day in which you left the house, left your everyday life, and did not do the majority of caregiving yourself. Guilty!
Caregiving is pretty much your main hobby. Not by choice!
You prepare all the meals, even though the person could do some of the prep work or cooking – even if it took longer or wasn’t done quite the way you’d prefer. Vic prefers my cooking.
You’ll drop everything to take a call from your ill loved one multiple times a day and then resist bringing the conversation to a close once you realize it’s not an emergency. Guilty, Guilty, Guilty!!
You have more fixed appointments in your weekly calendar for the person you take care of than just for you –i.e. no lunch dates, standing walks with a friend, visits to a gym. True!
You offer to do things for others reflexively — but you’d really never think of asking someone to do something very specific for you. Absolutely!
You cater to the person’s special diet needs (low salt, for example) but don’t pay any special attention to your own nutrition. Maybe…Ok guilty!
The last time you took a vacation was a long, long time ago!. Innocent!!! I went to England for a week in May 2012
A friend or relative slips and calls you a “control freak.” So? I don’t have a problem with it. Vic is my child and I know best. I love her more than any other person in the world loves her and only have her best interest at heart!
So what? I am guilty as is many, many other caregivers in my situation. We love so much that we want to protect, nurture and control. By caring we think we may extend our loved one’s life.
Tonight Vic showed me a birthday card that I gave her on the 31stof August 2002. In the February of 2002 Vic had her blotched back surgery that triggered 80 abdominal surgeries and years of pain, indignity and unbearable suffering…
I wrote “You are so special. You are brave, strong, resilient and caring. I love you so much! Baby, from now on we are moving forward. The end of all of this is in sight. Remain focused and continue to fight. I know things are getting better!”
3 October 2012 I would write: “You are so special. You have been brave, strong, resilient and caring all your life. I love you so much! Baby, from now on we are living one day at a time. The end is in sight. I am sorry I held you back for so many years. I am so sorry for the pain I have allowed you to suffer and endure seeking a cure. Know whatever I did was done in the name of love. Please forgive me. It is okay to let go now. Go in peace my beloved child. I love you more than life!”
So, in conclusion I must admit to myself, I have loved Vic with an obsessive, possessive all-consuming love all her life. From the first time she moved in my belly I loved her. When she wrapped her tiny fingers around mine I was lost…. I love you too much, child of mine, now and forever!
Vic had a good day. She had a visit from Willemien, a pharmacist friend of Esther. She soaked in her sons’ presence…
This evening she asked if she could have her injection a little earlier. Jared is going back to theatre tomorrow morning to have his stent removed. “Mommy, I need to try and sleep so I can be with my son tomorrow”
It is as if her wish triggered an avalanche of events.
Vic has been projectile vomiting since and the perspiration is pouring off her. Her heart is racing and her blood pressure is all over. Her abdomen is so distended and extremely tender on the abscess side!
Vic will not be at her son’s side tomorrow when he is readmitted to hospital.
I was recently nominated for the lovely blog award and graciously accept. Thank you Tracy Rydzy for this nomination. http://ohwhatapain.wordpress.com.
Tracy has opened my eyes to the world of the chronic pain sufferer. Vic hides things from me because she tries to protect me. I am so healthy and do not know or understand pain. Tracy articulates pain and her journey beautifully and I am grateful to her for sharing her painful journey with the world. It is such a valuable source of information! It has given me an insight into the dark, fearsome world of pain. Thank you Tracy and all the people who I nominated. You and bloggers like Katie Mitchell – http://connectivetissuedisorders.wordpress.com, (who nominated Tracy), have made my world a better place. I thank you all.
The Rules for The Lovely Blog Award:
– Thank the person who nominated you and link to them in your post.
– Share seven unknown things about yourself.
– Nominate other bloggers and blogs that you like or admire.
– Contact the bloggers you nominate to let them know and to link them back to your post.
1. I cry in the shower 2. I only learnt to cook after I got married – the 2nd time! 3. My ultimate career would be to be a spy. 4. I want to be the oldest person to ever skydive 5. I read the eulogy section in the newspapers 6. I feel guilty because I am so healthy. 7. I am a loner.
I have nominated the following bloggers because I enjoy their blogs very much and have found their information and comments helpful:
I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.
“I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy. We have always been so close….” Vic lamented this past week.
I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….
Knowing that death is imminent is takings its emotional toll on all of us
Vic said tonight that she has never been more scared in her entire life. She is scared of being “isolated” from us. She fears that we will not cope. She is so scared of the pain. She is so scared of leaving the boys behind….
I blogged on Vic’s fears before. https://tersiaburger.com/2012/07/01/vics-fears-2-7-2012 That blog was based on some research and actual observations. Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months. For the worse!
The good thing is that Vic is actually sharing her fears with me. Tonight we prayed over her fears. Vic, at last, is dealing with her fears.
Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad! Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it. Vic over the past couple of months has lashed out at the boys and I.
Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.
Vic feels guilty about being a burden on us. She also feels guilty that she will be leaving her children behind. Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident! I told her that I felt guilty for yelling at her when she was 4 years old. Until my dying day I will always remember the fear and confusion in her dark brown eyes….
Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…
We spoke and I told Vic that we simply have to let things go. We cannot change the past. We must fix what can be fixed and try to let go of the things that cannot be changed.
Vic is stressed that Jon-Daniel and she have drifted apart. He is angry with the situation. She wants to spend time with him to rebuild their relationship.
Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already. The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.
Vic has had many physical and emotional losses which have come before the loss of life itself. Yet she has gained some things too. She is seeking spiritual peace, a new relationship with her God.
Hospice has given Vic Azor for the anxiety. I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure. She is getting her life in order. Over the years we discussed death as a natural extension of life…. Now she is discussing her funeral with me. Psalm 23 ans 1 Cor 13 will be the readings… What I will dress her in… Her pallbearers…
I sense a loneliness of the heart in Vic. I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.
I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly, whilst her son suffered carrying The Cross… She had to stand by and watch Him die the cruelest of cruel deaths…
Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time. Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”
The subcutaneous syringe driver was halted as Vic’s tissue is so bad. Vic is now on 100mg Durogesic patches and morphine syrup. Initially it appeared to be an okay solution. Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.
Yesterday morning Vic was great! She obviously still has some of the intravenous morphine in her system. (I also gave her extra morphine syrup as a precaution). She went to breakfast with her friend Angela and had a wonderful time. She glowed when she got back. Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking. Madam was even wearing a shoe with a little heel (which we made her take off).
In the afternoon Vic started looking grim. She was nauseous and suffering from abdominal cramping. Her tummy was distending.
By 10pm last night Vicky was sobbing with pain. By 11pm she was vomiting uncontrollably. She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.
This morning I had an early meeting. Half an hour into the meeting Vic phoned sobbing uncontrollably. I was unable to hear what she was saying through her sobs. I just said “Baby, I am on my way…”
When I arrived at home Sr Ciza from Hospice was here. She had given Vic a morphine injection and an additional 25mg Durogesic patch. Vic was already looking so much better. Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge. I don’t think I am ready for that yet.
Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared. Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast. I nodded my “consent”. You see I had just read a comment from an incredible brave lady.
“my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. whilei see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before. My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/”
Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy http://ohwhatapain.wordpress.com/author/ohwhatapain
The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane. Since my first surgery, my life has basically come to a screeching halt. Any living I do is now in the slow lane, sometimes I never even make it off the shoulder. I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings.
It’s hard to deal with the slow down. I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that? Before “all this” I felt so strong. I felt like I could take on the world. I used to be busy everyday, all day and the craziness of my schedule was like a high. Now, I have maybe a quarter of that activity, some days, I have none. The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house. Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion. But I am still me. I refuse to let the pain change who I am.
I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse. I still push myself to do more, even if it comes with the cost of a day in bed. When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often. That part of my brain that refuses to accept this “new normal” can’t give up certain things. One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body. A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”
Sometimes the slow down causes resentment. I get angry that those around me have a life and are busy and that adds to the mood swings and depression. The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest. For me, a trip to Wal-mart requires a rest.
Flares do bring up an interesting realization, though. Until things get as bad as they are right now, I didn’t realize that I was in less pain before. So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison. Now if only I could return to feeling like crap instead of complete crap…
This poignant poem was written by a very gifted poet D.L.McHale. When I read it I wondered if this is what is going through my child’s mind. When you have a spare moment please visit the blog http://dlmchale.com. It will be a worthwhile visit! http://dlmchale.com
My dreams are fermented delusions
A kaleidoscope of meandering falls
Through time and space, while the
Screams of my inflictions penetrate
And annihilate my grip on reality.
My waking hours, of which few remain,
Adds another layer of darkness to an
Already bleak existence, while the light
Of relentless self-reflection blinds me to
Any hope of reprieve or absolution.
I stand with one foot in the grave
And the other hobbled by uncertainty.
I do not fear this final step into the abyss
So much as I dread the act of departure;
The inglorious gasp of a final breath
Inhaling the petrichor of a wasted life.
A silent scream rattles from my gut
Cursing the sun of a new day rising.
I cannot bear another savage stroke
From a Sun that fails to warm me.
Let the final night descend and into
Death’s warm embrace enfold my soul.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”
“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”
“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”
We all laughed.
“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned
Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”
The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.
“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”
I was truly taken aback. “Yes, I think we are coping. ”
“So Tersia, why do you think the boys need to see me?”
I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.
“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.
“Yes, Jon-Daniel said so” Alan replied.
“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused
“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.
“What type of party will she organize?” Alan asked.
The boys and I laughed!
“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”
“What type of things?” Alan asked
“Drive and take us for a milkshake” Jared replied.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”
The boys asked to see Alan for another session…. Thank you God for another angel!
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”
“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.” –Dame Cicely Saunders
The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman. She has a gentle voice and long fingers with short nails. She drives a Jeep and keeps large dogs. She looks like a naturalist.
“I am Dr Sue Walters from Hospice. The Pain Clinic asked us to see you. Is it okay for me to examine you?” she asked Vic in her gentle voice.
Vic’s abdomen was severely distended and very tender. She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication. Vicky’s vitals were poor.
Sue administered a strong morphine injection.
“Vicky, you appear to have an abscess on the right-hand side of your abdomen. The skin is hot to the touch and distended. I think you have a partial obstruction.” Dr Sue said to Vic.
“I am here to see if Hospice can help you. Do you realize that you are very ill my love?” Dr Sue asked Vic.
“Hospice will not hasten your death my love. It would be our aim and purpose to provide you with pain relief and quality of life. We will treat you and not the disease. It is exclusively your decision whether you want us to help you and how you want us to help you.” She explained to Vic
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care
Vic was in so much pain that she was barely able to speak. Tears welled up in her eyes and she softly said “Please doctor”.
“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked
“I want no life extending treatment. I am so tired doctor” Vic whispered. “I can’t do this anymore…..”
“That’s fine my love. We will try and relieve your pain and give you some quality of life.”
“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.
Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a subcutaneous morphine syringe system by that afternoon. Hospice would arrange for counseling for the boys.
She hugged me and left. All of a sudden I felt so alone again!
Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.
The first couple of days Vic slept a lot. She was tired but there was immediate pain relief.
The nausea subsided and the partial obstruction cleared two days later!
The first infusion site was in her leg. Within a day and a half the area “tissued”. A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain. We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm. Within two hours the needle came out again and the morphine was running onto the skin. It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.
Last night the tissue in the abdominal area had tissued again. It was also bloody and the morphine was running onto the skin and not into the tissue. Vic was nauseous with pain. I had no option but to remove the needle and re-inserting it into a different site.
“I think we should put it into the other side of your tummy” I said
“Mommy, I will insert the needle if you help me…” Vic replied
“No sweetie” I said. “I will do it”
My heart was in my throat. I removed the needle and cleaned the injection site. I disinfected the new site that I had identified. I took the needle in my hand and lifted the skin. I pushed the needle against the skin. I assumed that the needle would just slide in… It did not just slide in! There was resistance!! I let go of the skin and changed my position. I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.
“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.
I exerted pressure on the needle and it slid in… Sweet success!!!!
“Oh Mommy you are such a star! Thank you. That did not hurt at all!” Vic gushed.
I do not believe her. I had felt her little body tense up as the needle went in. It hurt!
My entire body shook. The bile rose in my throat and I slowly let out my breath.
We have all come such a far way. Until last night I could not watch anyone stick a needle into my child. Now I have stuck a needle into my child’s flesh. I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.
The good news is that I was actually able to work the whole week. It was the annual African Air and Defense Show and we exhibited. Normally I would be absolutely frantic about Vic. But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.
Vic is far more active. She is truly so much better. The partial obstruction appears to have cleared! She spends time chatting to the boys. On Saturday she took Jared shopping for a new shirt and shoes!
On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡” Vic handed him his baptism candle that she received 15.5 years ago at his christening. He lit his candle as he took responsibility for his own walk with God. Vic and I laid hands on him and prayed for him. It was so touching.
Joyous day!
Vic attended Jared’s confirmation service. I have never seen a more radiant and proud mother in my entire life.
She explained to us that Vic’s pain is what is keeping her alive. ”An adrenaline rush is the fight or flight response of the adrenal gland, in which it releases adrenaline (epinephrine). When releasing adrenaline, one’s body releases dopamine which can act as a natural pain killer. An adrenaline rush causes the muscles to perform respiration at an increased rate improving strength. It also works with the nervous system to interpret impulses that trigger selective glands.” http://en.wikipedia.org/wiki/Adrenaline_Rush
Today, having a loved one live with a terminal diagnosis for an extended period of time is fast replacing sudden and unexpected death as the norm. Ultimately, many will reach a point where medical technology may be able to keep them alive but can neither restore their health nor even improve their condition. In actual fact they are merely kept breathing…. More treatment will only prolong their dying.
It is at this point that patients and families face difficult choices about the kind of care they want….
I have seen studies that clearly show that patients who access Hospice, earlier in the disease process, actually live longer than expected. Ironically it seems that Hospice, with its emphasis on quality of life, actually keeps people going. When people who are ill have good pain and symptom control and their caregivers are well supported, they don’t want to give up; they want to live longer.
Vic has reached a stage in her life where she wants to die. She has absolutely no quality of life and is growing weaker by the day. Everyday Vic loses a little more of her independence and dignity. Vic needs help with almost all her day-to-day activities.
Opinion polls decisively show that most people would prefer to die at home, free from pain and surrounded by their loved ones. Sadly people often die alone in hospitals or nursing homes, attached to life support machines they do not want. It is also a fact thatmany terminally ill people die excruciating painful deaths because, even in death, their doctors suffer from Opiophobia…
“Opiophobia is the syndrome of failure to administer adequate opioid analgesics because of the fear of producing addiction or toxicity. The etiology of opiophobia is multifactorial: Peer pressure (provider and patient), regulatory agency pressure (real or perceived), and lack of education on opioids and the fundamentals of pain management all contribute to its persistence…. All of these factors contribute to the underuse of these relatively simple and very effective medications, due to no fault of the patients. ” University of Wisconsin textbook on pain medicine, Bonica’s Management of Pain, 3rd edition:
I promised Vic no more surgery and no more hospitals. https://tersiaburger.com/2012/06/01/1-6-2012 The only humane option left is Hospice. I have been fighting for Hospice to get involved with Vic’s palliative care not to hasten her death but to enhance her quality of life!
WHAT IS PALLIATIVE CARE
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help patients live as actively as possible until death;
offers a support system to help the family cope during the patients illness and in their own bereavement;
uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. http://www.hospicepalliativecaresa.co.za/What_is_palliative_care.html
WHAT TO EXPECT
Should the patient be accepted onto a hospice programme, the Hospice team together with the patient will develop a tailor-made plan care plan. Usually patients are visited by the hospice staff in their own homes. The care and support of the hospice team will help the patient and family as they navigate their way through the challenges of living with a life-limiting condition.
The main things hospice can help with are:
pain and symptom control
psycho-social support and advise
spiritual support
emotional support
bereavement support
equipment (wheelchairs etc)
The challenges that we as a family must face with Vic’s terminal diagnosis is complex. It includes evolving new structures and dynamics as the person we love very, very slowly slips away.
Last night and again tonight, Vic said to me “Mommy, I know you think I will live forever but you must prepare yourself because I know how my body feels…”
As a family we have learnt to cope with setbacks, Vic’s health steadily deteriorating and periods of seeming remission. This “extended grief”, wears us down and leads to the horrible realization that we sometimes find ourselves wishing that the process would end…. I have often said “Sometimes I am scared Vic will never die…” I do not want my child to die. I merely want her suffering to END!
As a family we have moved into a phase where the stress of the situation can no longer be ignored. It is making all of us ill.
This week has been an emotional roller coaster! On Tuesday I cried in front of a strange doctor. Wednesday I felt that I was losing the plot. I was unable to function on a professional level. My mind was absolutely fogged over. Thursday an angel named Christa evaluated Vic and I went from absolute despair to exuberance when I heard that Hospice’s Doctor would evaluate Vic on Monday morning…
Today when Jared and I were waiting to see the doctor after his CT scan we had a long chat…
He said “Oumie I can see when you are stressed. You zone out… You have been very stressed this week….”
“Yeah” I said. “I have been a little stressed this week.”
“Since you starting writing your blog you no longer wear a mask Oumie…You handled the stress better before! You always smiled.”
OMG. What am I doing to the boys? I realized today that I have to be more careful. The mask has to go back on. I scare them when I show my stress. Imagine what it would do to them if they read my blog….. Thank God they don’t!
I left the best for last though – no immediate lymph biopsy will be done on Jared. The lymph nodes are definitely enlarged but there has been no adverse change in the past two and a half weeks. We will give his kidney some time to heal and the CT scan will be repeated again in two months time.
I am feeling so positive!
There is a God and I thank him for Jared’s outcome, Hospice intervention, Baby Isak and my wonderful, loving family. I pray that He will enfold Vic and the boys in His Mercy and Grace. I pray for my mask!
Vic's Final Journey 